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Once we began to acclimate to Progressive Care, thanks to Volunteer help, it became like a new routine. Then things got stupid in a hurry. When Nolan was born, his left hand/wrist was a bit limp. We weren’t sure why, no one really was. It was checked on multiple times while he was in CVICU, but nothing was broken or amiss, they guessed it was just weak. So one day someone from the hospital brought him a brace for his wrist that would go on for a couple hours, then off for a couple hours. Simple, right? Wrong. This is where Progressive Care turned into the Three Stooges. Nurses would come in to put on his brace and say “Now which hand does this go on?” As if it wasn’t OBVIOUS which hand was just flopping around. OR, to make it worse, some of them would put it ON THE WRONG HAND! Nolan was also on continuous feeds, and it never failed that a CNA would come in and ask “When was the last time he ate?” and it got to where I’d say things like “He’s on continuous feeds…see that pump in the bed with him? The big one there? That one.”

It was frustrating, and I didn’t want to be rude. But I know from working in the medical field that each patient, Nolan included, has a freaking CHART. And if you read the chart you can find out lots of awesome things like the fact that he’s on continuous feeds or that his brace goes on his left hand. WOW! Imagine that! It was like I was working with amateurs, though. So I decided to take matters into my own hands and call the nurse manager for Progressive Care. If you remember back in https://hlhsdad.wordpress.com/2013/11/01/you-have-a-say-in-your-childs-care/ I spoke with a nurse manager at NICU about Nolan’s care and the result wasn’t the best. I definitely didn’t want a repeat of that, so I decided to choose my words wisely. I told the Nurse Manager about the things that had been happening and how, to be honest, I wasn’t the most confident in the care he’s been receiving on that floor, but that I didn’t want anyone to be in trouble, I just wanted to be able to work together to ensure Nolan got the best care possible. She was very nice and showed legitimate concern about the issues I raised.

She called me back later in the day and said that, while remedial, her quick solution was to have Child Life print up a little poster called “ALL ABOUT NOLAN”, and I could write on there his likes, dislikes, which hand his brace goes on, yadda yadda. I know, it seems silly to have to do that, but it was a step in the right direction for the team. And would you know? It seemed like it worked! Things started getting less silly there and the frustration level went down. The Nurse Manager even made it a point to check in from time to time to see how things were going. It was so much different from the last time I spoke with a Nurse Manager, this was a positive experience. But positive or not, remember this: you DO have a say in your child’s care. If you don’t like how it’s going, say something!